Alzheimer’s and wanting to go home

It’s not far, jes’ close by,
Through an open door;
Work all done, care laid by,
Goin’ to fear no more.”

These are the opening lines from the song, “Goin’ Home,” based on the Czech composer Antonin Dvorak’s famous “Largo” theme from his Symphony No. 9 (From the New World), Op. 95. These lyrics were written by one of Dvorak’s pupils, William Arms Fisher (1861-1948), who adapted and arranged the Largo theme. (Source: American Music Preservation.com)

Heading Home

Wanting to “go home” is a common behavior of persons with Alzheimer’s. Dementia care experts tell us that the “home” a person wants to return to is their childhood home. The need to “go home” often signals a need for privacy, for comfort, for security.

In Part 1, I explored ideas how to identify and address your loved one’s needs when they express this urge. It was based on ideas gleaned from caregivers and from experience with my own mother. In Part 2, I hope to guide you in a self-introspection, a reflection where you imagine you are the one wanting to “go home again.” Find about fifteen or twenty minutes when you are free of your responsibilities. Next, settle into a place where there will be no intrusion. If you are ready, then let’s begin.

Gently close your eyes and focus on your breathing. When you breathe in, feel your body relax. When you breathe out, feel the tensions leaving your body. Become aware of how your body is becoming calm and relaxed.

Now, go to your inner space where you are free from any difficulties. Indulge in the feeling of well being, and a feeling of being at one with the world.

Recall a time in your life when you were away from your home and had a yearning to return home. What was it like for you then? Did you desperately wish to return home and couldn’t wait to get back there?

Is there a certain degree of comfort that comes with uttering these words? Do you find it soothing? Does it evoke emotions deep in your heart, such as a feeling of security in knowing there is a place where you belong? Are you longing for that overwhelming sense of familiarity: the feelings that come from having close relationships; treating everyone as equals; the familiarhabits and rituals; knowing what to expect of others and what they expect of you; knowing there is a structure of which you are a part?

You will have other thoughts that emerge at this time which subscribe to the statement, “I want to go home.” What is it about these attributes that are like a magnet pulling you in that direction? Are you missing the gentle touch of a close and loving relationship? Try to identify as many possible aspects that you can.

After a few minutes, allow this scene to gradually fade out and focus on your breathing.

Now, gradually “crawl into the skin” of your loved one. Take as long as you can to experience what this might be like. You are wearing the same clothes. You have the same mannerisms, the same gait, etc.

The Old Homestead

As you “become” your loved one’s persona, you can hear your own voice saying to yourself, “I want to go home.” What are you feeling when you say these words? What is missing in your life that you want to recapture? What precipitated this request of “wanting to go home?” Was it a momentary sense of familiarity, like déjà vu, or somewhere in your being where there is this treasure of home – a place where you belong?

Stay in this phase as long as you wish, allowing information to emerge. Then gradually “crawl out” of the skin of your loved one and back into your own.

Focus your awareness on your breathing. Become aware of the value of this experience. What have you discovered about yourself? What have you discovered about your loved one? What have you discovered about the universal human need for a place to call “home?”

Now, when you hear your loved one tell you, “I want to go home,” will you hear these words any differently? What has changed for you? How was this change brought about? You may want to write down your reflections. This will make it easier, then, to read back from time to time your insights gleaned from this meditation.

Blogger and caregiver, Bob DeMarco, posted an article on this topic on his popular website, Alzheimer’s Reading Room, October 27, 2013. He responded to his mother’s request by telling her, “I don’t want you to go anywhere. I want you to stay here with me.” He wrote that it took time for his mother to come around, but by reinforcing this many times with warmth and love, his mother felt secure enough and eventually stopped making this request.

The lyrics of the song, “Goin’ Home,” are a powerful sentiment that springs from the nostalgia of the soul that all humans feel:

“I want to go home. Please take me home now!” This was my Mom’s frequent request for a period of a few months. At the time, she was residing in a dementia unit at an assisted living facility after my father passed away. Her “home” was now the second floor of the facility, and a one-room bedroom with a bathroom that she shared with another female resident.

Home, Sweet Home

It broke my heart to hear Mom’s plea. I often struggled for ways to distract and re-direct her. I even wrote a poem, “Home, Sweet Home,” about my feeling of helplessness, and included it in my memoir, Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion.

This blog’s title is from a familiar quote, “Home is where the heart is.” It is attributed to Pliny the Elder, a Roman author, naturalist, and natural philosopher. Pliny understood its implications back in the first century AD. The concept of “home” has many emotional connotations for each of us. For me, home is a place of comfort, security, love of family, refuge from the world’s conflicts, where I can be myself.

Dementia care experts tell us that the “home” a person wants to return to is their childhood home. The need to “go home” often signals a need for privacy, for comfort, for security. It can be especially frustrating for you, the caregiver, to hear this plea when your loved one is already home, or are living now with you, their daughter or son.

For someone with Alzheimer’s, it is a “normal” behavior, given the confusion, anxiety, and loss of control they may be experiencing at the time. Their long-term memory of their childhood home is still intact. Telling them they are home, does not relieve their anxiety. Reasoning or using logic does not work in this situation. Arguing will only make things worse.

The Journey Home

Instead of correcting them, here are a few ideas I gleaned from experience and from other caregivers:

Try to understand why they may be saying this. What is it that they really mean? Sometimes this might be your loved one’s way of letting you know they are scared, or anxious. They just need extra reassurance and comfort. A gentle hug, or stroking of the shoulder, arm, or hand might help. Simply sitting with them, or giving them a soft blanket or a stuffed animal to cuddle might also calm them.

Is there a certain time of day when they exhibit this need to go home? Is there a pattern? If it occurs late in the afternoon or early evening, they may be exhausted from the day’s activities. This is their way of telling you they are tired out. If that is the case, letting them rest while you put on soft music may ease the situation.

Agreeing and redirecting might work. Saying something like, “We’ll go as soon as I can tidy up here. Would you like to help me?” Or, “Let’s get your coat so you won’t be chilly.” Just the act of getting ready can be calming. Then as you walk to the closet, re-direct them, chatting about something pleasant, stop in the kitchen to get a drink, or get involved in some activity that they like to do.

They may need exercise or a change of atmosphere.Respond by saying, “Let’s go,” and take them for a walk in the neighborhood. You might even have to drive them around for a few minutes, then suggest a stop, at a favorite spot of theirs, like a McDonald’s, a park, etc.

Have you recently redecorated, or moved furniture around? Is the place where they live a new and unfamiliar environment for them? Have they recently moved into your home or an assisted living facility? If so, can you make their room a place filled with familiar furniture, a favorite quilt, photographs, knick knacks that they love, items that are familiar to them?

Is there a set of circumstances that trigger this request? For example, are children coming home from school, or is it rush hour time with busy traffic? These triggers might signal that your loved one needs to be home. In my mother’s case, she was frantically pacing the corridor one afternoon when I came to visit. She kept saying, “I have to get home before the kids, or Mom will be mad at me.” It took me a few minutes to finally figure out that when Mom was in high school, she needed to get home to care for her younger brothers as her parents both worked in their grocery store. It was her responsibility to look after them until supper time. Mom felt an urgency to follow the same routine she did while growing up. I was able to distract Mom by telling her to come with me to her room so that I could call her mother on the phone and let her know Mom was on her way. She calmed down and walked with me. By the time we got to her room, Mom had forgotten why we were there. I was very relieved that I didn’t have to “fake” a phone call to her deceased mother.

Try to figure out what might make your loved one feel the safest. Make up an excuse: “The house is being painted right now. We’ll go later.” Or pull out some photos of their childhood home, and say, “We can’t go today, but tell me about your home. What was your favorite room?”

Check for any physical discomfort or personal hygiene needs. They may not be able to tell you they have to go to the bathroom, need a nap, or are thirsty and need a drink of water. Something as simple as taking care of one of these needs may resolve the matter of going home.

The 20th century British playwright and poet, T. S. Eliot, noted that “Home is where one starts from.” It all comes down to you, the caregiver, remaining calm and composed, trying to discover the underlying meaning of their request. Sometimes you just have to get creative. If you rule out environmental factors, a stimulus overload, physical or emotional needs, you’ll likely be able to find what will reassure and bring comfort to your loved one.

In my next blog in two weeks, I will continue this theme with a “Part 2.” It will include a reflection for caregivers. I hope it will help you to imagine what it might be like when a loved one pleads with you to take them home. Please stay tuned!

May you find peace, patience, and joy in your caregiving today and every day!

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CNN’s Dr. Sanjay Gupta traveled to the Netherlands to show a model village, a New Age “home,” for persons with dementia. Take a look at this 23-minute video: https://youtu.be/LwiOBlyWpko.

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There have been many songs written about going home. Here is a YouTube video of the song John Denver made famous, “Take Me Home, Country Road,” with lovely photographs: https://youtu.be/oTeUdJky9rY.

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